Hi everyone,
A question about Entocort: I've been on 3 pills a day (9mg, I think) for nearly six weeks. The D was getting a little bit better. It was still D, but there were indications that it was thinking about maybe firming up. "Fickle! Very, very fickle!" as Jane Austen would say. But for the past three days or so, it's been back to "normal", I've had a few of those morning "accidents" on the way to the bathroom, and I don't know what went wrong. I suppose it could be something I ate, but I was curious whether anyone had experienced something similar with getting better then worse on the Entocort.
Now my question about Enterolab: What is it? I see it all over the boards and I can infer that you send them your stool sample and they send you food intolerance results. Could someone direct me to a post that explains it?
And a third question: I'm sure any evidence for this is anecdotal, but has anyone noticed a clear connection between stress and the severity of your MC at any given time?
That's a lot of questions! I have more, but I'll stop for now. Thanks for your input.
Courtney
Entocort and Enterolab
Moderators: Rosie, Stanz, Jean, CAMary, moremuscle, JFR, Dee, xet, Peggy, Matthew, Gabes-Apg, grannyh, Gloria, Mars, starfire, Polly, Joefnh
How about their very own web site until Tex chimes in here.
www.enterolab.com
Regular docs will poo poo it (pun intended) but not the PP here who have used it...........
www.enterolab.com
Regular docs will poo poo it (pun intended) but not the PP here who have used it...........
DISCLAIMER: I am not a doctor and don't play one on TV.
LDN July 18, 2014
Joan
LDN July 18, 2014
Joan
Hi courtney,
Yes, for some of us, the healing process amounts to two steps forward, and one step backward, and this is especially true for those who choose to try to control their symptoms by diet alone. I have a theory as to why this happens, but this is strictly my opinion, and has never been verified by actual testing, as far as I'm aware, so take it for what it's worth - strictly a WAEG.
I suspect that when the immune system becomes engrossed in a major autoimmune reaction, if the reaction becomes chronic, then out of desperation, eventually, the immune system will essentially direct all of it's resources toward that reaction, and it will tend to ignore other, less significant "irritants" that might be present, (after all, it can only do so much). Once that primary reaction begins to taper off, (IOW, when the inflammation begins to subside, then the body becomes "aware" of any secondary issue, (or issues), and it will launch an attack against it, (or them), thus reigniting the inflammation, (but due to a different cause, this time).
Whether that theory is correct or not, many of us do indeed experience setbacks, on our paths to remission. At any rate, as you have noted, during the early stages of recovery, indications of success can be very fickle.
Some of us have good results with Entocort, but others seem to have such significant food intolerances, that budesonide is just not able to maintain control, unless certain offending items are removed from the diet. This seems to be especially true for those of us with double DQ1 genes. If that becomes necessary, then testing at Enterolab can save a lot of time, and it can eliminate a lot of trial and error experimenting. I see that Joan has already provided a link to their website. There is a lot of good information there. Dr. Kenneth Fine, (the founder of Enterolab), is a GI doc who has MC himself, and the dearth of valid information about the disease is what prompted him to devote his life to researching the disease, and discovering ways to treat it. He is the one who originally developed the "Pepto-Bismol treatment", (which some GI docs have recently discovered, and are now prescribing), but he no longer recommends it, due to the risk of toxic reactions for some individuals. He controls his own symptoms, by diet alone.
And finally, yes, stress can definitely exacerbate MC symptoms. While stress probably doesn't initially cause MC, it can definitely make the symptoms worse, and prolong reactions. For some members, apparently stress can be enough to actually trigger a flare, and this has been reported many times here, by many members. For example, many members on a maintenance dose of Entocort, have had to revert back to a full dose for a while, in order to regain control, during a particularly stressful period in their lives.
If you want to read some old threads about Entocort testing, these contain some discussions on that topic:
http://www.perskyfarms.com/phpBB2/viewt ... st+results
http://www.perskyfarms.com/phpBB2/viewt ... st+results
And down in this thread, (in post number 4), you will find an e-mail response from Enterolab, regarding a question as to whether or not Entocort will affect the accuracy of the tests:
http://www.perskyfarms.com/phpBB2/viewt ... st+results
If you need more information about any of this, please don't hesitate to ask.
Tex
Yes, for some of us, the healing process amounts to two steps forward, and one step backward, and this is especially true for those who choose to try to control their symptoms by diet alone. I have a theory as to why this happens, but this is strictly my opinion, and has never been verified by actual testing, as far as I'm aware, so take it for what it's worth - strictly a WAEG.
I suspect that when the immune system becomes engrossed in a major autoimmune reaction, if the reaction becomes chronic, then out of desperation, eventually, the immune system will essentially direct all of it's resources toward that reaction, and it will tend to ignore other, less significant "irritants" that might be present, (after all, it can only do so much). Once that primary reaction begins to taper off, (IOW, when the inflammation begins to subside, then the body becomes "aware" of any secondary issue, (or issues), and it will launch an attack against it, (or them), thus reigniting the inflammation, (but due to a different cause, this time).
Whether that theory is correct or not, many of us do indeed experience setbacks, on our paths to remission. At any rate, as you have noted, during the early stages of recovery, indications of success can be very fickle.
Some of us have good results with Entocort, but others seem to have such significant food intolerances, that budesonide is just not able to maintain control, unless certain offending items are removed from the diet. This seems to be especially true for those of us with double DQ1 genes. If that becomes necessary, then testing at Enterolab can save a lot of time, and it can eliminate a lot of trial and error experimenting. I see that Joan has already provided a link to their website. There is a lot of good information there. Dr. Kenneth Fine, (the founder of Enterolab), is a GI doc who has MC himself, and the dearth of valid information about the disease is what prompted him to devote his life to researching the disease, and discovering ways to treat it. He is the one who originally developed the "Pepto-Bismol treatment", (which some GI docs have recently discovered, and are now prescribing), but he no longer recommends it, due to the risk of toxic reactions for some individuals. He controls his own symptoms, by diet alone.
And finally, yes, stress can definitely exacerbate MC symptoms. While stress probably doesn't initially cause MC, it can definitely make the symptoms worse, and prolong reactions. For some members, apparently stress can be enough to actually trigger a flare, and this has been reported many times here, by many members. For example, many members on a maintenance dose of Entocort, have had to revert back to a full dose for a while, in order to regain control, during a particularly stressful period in their lives.
If you want to read some old threads about Entocort testing, these contain some discussions on that topic:
http://www.perskyfarms.com/phpBB2/viewt ... st+results
http://www.perskyfarms.com/phpBB2/viewt ... st+results
And down in this thread, (in post number 4), you will find an e-mail response from Enterolab, regarding a question as to whether or not Entocort will affect the accuracy of the tests:
http://www.perskyfarms.com/phpBB2/viewt ... st+results
If you need more information about any of this, please don't hesitate to ask.
Tex
It is suspected that some of the hardest material known to science can be found in the skulls of GI specialists who insist that diet has nothing to do with the treatment of microscopic colitis.
Joan, thanks for the website, and Tex, thanks for the additional information. My GI told me (at my appointment in August) that I should go on the GF diet and take the Entocort for 2 months and when I came back for my appointment at the end of October I would be all better 
Ha! After five years of this I was suspicious of such an easy answer, and I see I was right!
I'm going to look further into the Enterolab testing. It sounds like that might be the way to go...definitely easier than trying to figure out what among many things could be making me sick. Eventually, I would like to handle this through diet alone. I would have liked to have gone that route in the first place, but my GI thought I needed to get control of this quickly, and I think that in this case he was probably right. I have been fortunate in that I have not had too many side effects from it; some of my joints have swollen a bit, and I've been thirstier than usual, but that's all.
Many thanks for your input.
Courtney
Ha! After five years of this I was suspicious of such an easy answer, and I see I was right!I'm going to look further into the Enterolab testing. It sounds like that might be the way to go...definitely easier than trying to figure out what among many things could be making me sick. Eventually, I would like to handle this through diet alone. I would have liked to have gone that route in the first place, but my GI thought I needed to get control of this quickly, and I think that in this case he was probably right. I have been fortunate in that I have not had too many side effects from it; some of my joints have swollen a bit, and I've been thirstier than usual, but that's all.
Many thanks for your input.
Courtney
